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wewillbeatthis

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Hello my second family!

Happy Holidays to all! I hope everyone has enjoyed these last few days with family and friendsd. I wish you all a Happy and Safe New Year!

So we found out that we are having a baby and my husband and I are so happy as well as the rest of the family... Dad can't wait to have a baby around but some days he seems not so happy about it. Like he is scared or something I don't know and don't get it....

Well my family said something that really got to me and hurt me and has been eating at me for like a week. They told me don't drive with dad if you don't have to. We love you and him and worry about him driving. Now you are expecting and have another life to worry about... I did not get it and sort of fought with them about it. I got things like he could have a seziure, not stop on time, loss control of the wheel, step on the gas or the brake late... Where was this all coming from...

Dad has the following

Gait very bad and has been this way for 5 years he uses a cane to go up and down stairs and in and out of house and in bathroom and bedroom... Rollator around the house, shopping, working, and resturants, carriages at the big stores...

Speech most days good by evening it is slow with a slight slur for the past two years... Some days very slow and nasal and wet and slurred usually this happens when he does not drink enough water or drink anything much for that matter and builds up a great deal of phlegm and this makes the nasal speech much worse and he gurrgles mid sentence and gets frustrated or has to repeat because he gets mad...

Swolling and eating eats tons as he always has with little to know problems... For example Christmas Eve no problem at all and ate tons... Christmas day knowing what was said and in a bad mood and eating by candle lite dad was coughing a bit and had some trouble with dinner, drinking and eating. One track mind and his mind took over and tightened all the muscles up....

We got home and within an hour the speech was better and he had eaten an entire hughe salad without a problem... what is the deal with this why does it come and go and happen?

Can we just chalk these days up to bad days and that tomorrw is a new day or do we need to get things looked at and ensure we have no prblems?

I am sorry to go on and on I am frustated why someone would say sezuire or whatever else they said. ALS and sezuires why would one say this because his speech is a little slurred today what? He drives and has total control on the car in reg weather and even snow.... I think these are people that just don't understand that as anything or anyone else we have good and bad days...

My questions to all of you:

How importat is Range of Motion exercises? He has not been doing them and can this effect everything?

How important is it to drink a great deal of fluids to help the phlegm and palate which in turn causes coughing, voice problems, and eating issues?

Clinic in September was great was told going on 5th year and strength is great, only issues is a tighter ankles and legs, gait slower, balence, occasional nasal voice due to the palate perhaps being spastic....

Please write back with your thoughts something to be concered about or something that can be managed?

Jen
 

Al

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First. ALS doesn't cause seizures. ROM exercises will keep the limbs supple which will help if he is still driving.
We did a thread on when to stop driving. You should check it out. You have to find your own balance of fluids. What works for me might not work for him. Try not to let family get to you.
AL.
 

Gina

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Hi Jen,first of all let me say Congratulations to you and your Husband on the upcoming birth of your child!My husband also has Als and one of the things that has kept him going is the Grandchildren!When he was first diagosed my Son & his wife were expecting thier first child.He was delighted yet afraid he would not be here long enough to see her...well it is 2+years and she is so much a part of his life and since then we have had another little girl grandchild...she is just over two months!I think your Dad may be thinking the same way my husband was in that he was so happy and yet feared that his grandchild would never get to know him.............I agree with al about the seizure thing ...nothing to do with als.....I just wish sometimes these familly members who feel the need to give advice would at least familarize themselves with what this disease entails.....Have any of your familly had a bad experience driving with your dad lately?........Im sure that thier concern is genuine and i hope you find the answers you need on this forum......Gina
 

CindyM

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Congrats Jen on the impending birth. Hope you are feeling well! I think AL and GIna sadi it best- don't let family get to you. You are way more knowlegable than the rest of the family since you are close to Dad and see his capabilities, plus you are taking the time to learn and research so you have to trust your own judgement. Sounds like the worriers don't know much about ALS. They might be confused about the true causes for his slurred speach.
 

wewillbeatthis

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Full of Tears and Fear Today

Thank you all for your responses...

I am I guess over what the family has said and chalk it up to not understanding... However, in speaking to dad today I can hear how wet, gurglly, nasal, slow, and slurred his speech has been the past few days. It is as if he has a cold or something going on. He is eating just fine. Then I go on line and read and I am about to scream and cry because I don't know what to do... I don't want him to choke although he is fine eating, I don't want him to get sick like phneomna I mean what is going on?

The speech therpaist just saw him in September and said that all was fine with his swolling and eating, and his talking was a bit nasal and he needs to speak lower and stop yelling on the speaker phone and cell phone, as well as drink more... Could this really help all of that or is somethig really bad approaching us? What can I do and what do I look for?

I am so scared please help and suggest...

Jennifer
 

patricia1

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First let me congratulate you and your family on the new baby. I have the same problem No one wants me to drive either and I would never drive my grandkid You father will know when it is time to stop.No one will have to tell him. However I did find it hard to stop driving Now I have to wait for someone to drive me everywhere.
If your father gets better with rest maybe he has MG. Or the stress of the day and holidays makes his ALS worse. Does he have a positive ALS Pat
 

wewillbeatthis

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Dad does in fact have a positive ALS doctor if that is what you are asking. I'm sorry I am not familer with ALS PAT.

The doc is great we could not have asked for a better one... As for what you said about MG it was never considered but since dad first started with this disease or whatever MND disease he has rest has made it better and stress has made it worse... Every few monts we have a bad few days and then things are back to normal.... So I really don't know what the deal is but as long as it contiues on the path it's been on we will be happy...

So last night he did his ROM exercises with my husband and promised to do them three nights a week. We will hold him to this promise...

His voice was better last night although still a bit gurggled and nasal and struggled.... This morning it was great actually so we are coming out of the last few bad days sort of speak I call it a flare up. So we will be back to normal in a day or so and all will be good for a few months and then a small flare up and then back again to normal it is a rollercoaster but as long as it keeps going this way we will continue to be happy.....

My thoughts and prayersare always with us all...
Jen
 

patricia1

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Hi your fahers symptom are not that of als How many neuros has he seen. Has he been tested for MG there are blood test for that.. ALs doesnt have good days like that. I hate to bother you but its something to think of. Doctors make mistakes Take Care Pat
 

wewillbeatthis

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He has seen two nuros... He has had many tests to rule out everything.....

No bother at all Pat ask any questions you like I will be more then happy to answer...

Take care

Jen
 
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